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Advancing CYSHCN Support Through Collaboration:
Care Coordination Partnership with Family Support in
State CYSHCN Service Systems (F3)
February 11, 2013 4:15pm
Alicia M. L'Esperance, BS/BA
Partners in Health Program Manager,
New Hampshire Department of Health and Human Services Special Medical Services
Kathy Higgins Cahill, RN, MSN
Program Manager,
New Hampshire Department of Health and Human Services Special Medical Services
Elizabeth Collins, RN-BC, BA, BSN, MS
SMS Administrator/ CYSHCN Director,
New Hampshire Department of Health and Human Services Special Medical Services
19351935 Title V of Social Security Act established the Maternal and Child Health and Crippled
Children’s Services (CCS).
19371937 NH Developed CCS programs providing direct clinical services for children with categorical
conditions, such as spina bifida.
Special Medical Services is the NH agency responsible for Title V CYSHCN
1989 1989 New federal mandate to provide all children with chronic medical conditions access to care.
Special Medical Services began
transferring condition based clinics to the
tertiary medical center (when available)
Special Medical Services Community-Based
Care Coordination emerged.
MCH nationally adopted the pyramid of core
public health services, with the emphasis on
enabling services verses direct health care
services.
History: NH Title V - Children & Youth with Special Health Care Needs
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AMCHP. Retrieved January 10, 2013 from
http://www.amchp.org/AboutTitleV/Documents/MCH_Pyramid_Purple.pdf
19751975 NH was the 1st State to move developmental services (BDS) to a
community setting through Legislative bill (NH RSA-171-A) mandating:� Individual service plans &
� Creating 12 community area agencies for individuals with ID/DD
19811981 A federal court decision eliminated unnecessary institutionalization, and
NH planned: � Institutional reform &
� Community placements
1984 1984 NH received a Medicaid (HCFA)
waiver to expand community-based
services, for individuals with ID/DD: � Personal care & in-home support,
� Supported employment, &
� Environmental modifications
National Data
National Data
History: NH Family Support
National Data
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History: Child & Youth Chronic Health Family Support Services
19891989 NH Family Support Act funded 12 Area Agencies, and families began
advocating for Family Support Services (FSS) for chronic health conditions.
19911991 NH had all community-based developmental services.
1992 1992 Chronic health FSS pilot was funded by the Robert Wood Johnson Foundation.
19951995 Chronic health FSS became a statewide program, created legislatively (NH
RSA 126-G), after pilot evaluation, and funded by Social Services Block Grant &
Medicaid Targeted Case Management billing.
The new Partners in Health (NH PIH) program was contracted out for
administration by the Hood Center at Dartmouth for over 10 years, and expanded
to mirror the BDS Area Agencies.
SSBG funds are intended for:
� Achieving or maintaining economic self-support to prevent, reduce, or eliminate dependency
� Achieving or maintaining self-sufficiency, including reduction or prevention of dependency� Preventing or remedying neglect, abuse, or exploitations of children and adults unable to protect their own
interest or preserving, rehabilitating, or reuniting families
� Preventing or reducing inappropriate institutional care by providing for community-based
care, home-based care, or other forms of less intensive care� Securing referral or admission for institutional care when other forms of care are not
appropriate or providing services to individuals in institutions
NH Special Medical Services and Partners in Health
History: Pre-Collaboration Timeline & Events
2007 2007 - Statewide meeting of
� Developmental Disability Family Support
� Children & Youth Chronic Health Family Support (PIH)
� Special Medical Services (SMS) Care Coordination (Title V
CYSHCN)
� Early Intervention
- Special Medical Services (SMS) realigned from Medicaid Client
Services to the Bureau of Developmental Services (BDS), with the other
community-based services.
20082008 - Partners in Health (PIH) realigned from BDS to SMS & sub-contract
administration moved from a contracted entity to SMS.
20092009 -- PIH Management & staff were hired in SMS.
20112011--2012 2012 –– Strategic Planning for all SMS servicesStrategic Planning for all SMS services
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Care Coordination Model (Design & Population Served)
Assessment Domains CYSHCN & Family:
� Health status
o Interview family & provider
o Review medical records
� Education issues
o IEP & IFSP Review
� Access to equipment and services
o ADL’s, health care transition
� Community resource utilization
� Health care related finances
o Health care needs, health insurance status, Medicaid, Social Security, etc.
� Psycho-social/cultural issues
o Affecting ability to provide care
Population Served by Care Coordinators:
• 450 CYSHCN (FY 12)
Served by 7.5 FTE:. 5.5 RNs, 2 FTE SW
• 333 (FY 12) Children with neuromotor disabilities
Served by 2 FTE RNs.
Family Support Model (Design & Population Served)
Assessment Process Family & Youth:
� Assessment of strengths, needs, and goals
o Building on strengths & natural supports
o Family check lists of needs (domains)
o Focus on future planning with an
assessment of family goals
� Creation of Goal Sheets/ Action plans
o SMART goals sharing responsibility
� Effective communication
o “Supportive Listening” (NH PIH 2008)
Population Served by Family Support Coordinators
• 1294 Children with Chronic Health (FY12)
Served by 13 FTE:
4 FTE Masters (Social Services),
6 FTE Bachelors (2 RN, LPN),
3 FTE 20+ years experience,
family, or some college
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Care Coordination Model
Services Offered:
� Partner with families to increase their capacity to navigate health care
and related systems
� Develop an individualized care plan to address the child’s health and
related needs, including transition
� Coordinate and monitor health care among various providers
� Refer to or assist with social, financial educational, and psychological
services
� Provide short term health related financial assistance
� Provide multidisciplinary services to children with neuromotor
disabilities
� Determine Complexity Scores for the child and family
� Routinely assign a Level of Care Coordination Services
(Services)
Family Support Model
Services Offered:
� Develop family skills in navigating and accessing community resources
o Environmental modifications
� Address psycho-social needs;
o Opportunities for breaks and support:
o One-on-one and group support
o Camp, Respite, Recreation
o Support families in health care & school visits
� Plan with families to improve finances; provide short term flexible
financial assistance, family grant writing, program application support, and
job support related to impact of the condition
o Transportation, Groceries, Household
� Support family leadership councils
o Internal policies & Community initiatives
o Support groups, Networking, & Training
o Recreational activities & Events
(Services)
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Framing: Overview of Care Coordination & Family Support
History
Families
Confused!•
CC FS
Collaboration Scale Overview
� Shared Direction.
� Leadership Based on Strengths.
� Encouragement and Value.
� Frequent Communication.
� Effective Communication.
�Mutual Accountability.
Adapted from NH Community of Practice on Transition from
“Collaborative Partnerships: Key Features of Success, A
Performance Rating Scale” by John A. MCLaughlin, Ed. D. and
Katzenbach & Smith’s “Team Basics”
� Formation of a Team
� Collaboration Scale
Planning Models Incorporated
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May
2010
#1
October
2010
#2
May
2011
#3
December
2011
#4
May
2012
#5
October
2012
#6
NH CYSHCN Care Coordination and Family Support
Collaboration Timeline & Meeting Topics
- Vision
- Ground rules
- Roles Exercise
Generating lists of
each program’s
primary function
- Case Study
- Intake Interview
- Homework
Regional Meetings
Define working
relationships
- Family Centered
Care Training
- Effective Helping
Relationships
- Role Clarification
Review & edit list
- Teamwork
Magic Stick exercise
& concepts explored
- Barriers & Benefits
Small group exercise
- Shared Cases
Provided list
- Homework
Regional Meetings
Discuss cases &
relationships
- Compassion Fatigue
Training
- Epilepsy, clinical
and family
- Check-in
Discuss status of
regional meetings
- 2 Regional Teams
Share how they
work together (early adopters)
- Youth
Presentation
About working with
a collaborative team
- Homework
Regional Meetings
Continue
- Motivational
Interviewing
Training
- Healthy Homes
Training
- Revisit
Information &
Referral
Second draft of
process
- Youth Case
Example
Coordinator
presentation of
working with
youth
- Homework
Regional with
management
& I&R
Workgroup
- Judgment &
MI Training
- Diabetes
- I&R Workgroup
Coordinator
Presentation
- Care Plan
Collaborative
Example
- Team Revisited
- Shared
Application
- Homework
Regional with
management & I&R
Pilot
- Strategic
Intentions &
Satisfaction Survey
- Cultural
Competency
- Collaboration
Timeline Reviewed
- I&R, MI, &
Collaboration
Status Presentation
- Shared
Application
Process
Discussed
- Homework
On-going Regional
& Joint Program
Meetings
-Culture of Poverty
- Working for
Families in change/
Managed Care
- Mental Illness
Norming &
Performing
Norming &
Performing
Storming &
Norming
Norming &
Storming
Forming,
Storming, &
Norming
Forming &
Storming
Information & Referral Pilot Overview
Information & Referral Pilot Results
• Coordinators demonstrated improved referrals between programs
• Pilot validated coordinator roles met family needs
• Pilot further clarified coordinator roles
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Summary of Documents Used For Collaboration
• Collaboration & Training Timeline
• Primary Roles CBCC & FSC
• Regional Meeting Homework
• Collaboration Scale
• Case Example
Collaboration ScaleCollaboration ScaleCollaboration ScaleCollaboration Scale
Please Rate 1-5 (1=low, 5=high) your experiences with collaboration among CBCC & FSC
in your region.
_____ SMS CBCC & PIH FSC have established a clear, shared sense of direction.
_____ SMS CBCC & PIH FSC alternate who leads based on the challenges faced.
_____ SMS CBCC & PIH FSC encourage and value each other’s contribution.
_____ SMS CBCC & PIH FSC communicate frequently.
_____ SMS CBCC & PIH FSC communicate effectively: clearly, completely, concisely,
concretely, and correctly.
_____ SMS CBCC & PIH FSC are mutually accountable to specific goals.
Adapted from “Collaborative Partnerships: Key Features of Success, A Performance
Rating Scale” by John A. MCLaughlin, Ed. D. and Katzenbach & Smith’s “Team Basics”
Success Points & Results
Overall SMS CC & FS Coordinators: Collaboration BEFORE & AFTER Initiatives
17%
9% 9%
22%
65%
43%
65%
43%
74%
43%
70%
35%
65%
30%
74%
43%
26%
26%
26%
30%22%
22%
43%
26%
35%
17%35%
9%
30%26%
35%22%
35%
9% 9% 9%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Before After Before After Before After Before After Before After Before After
Shared Direction Leadership Based on
Strengths
Encouragement &
Value
Frequent
Communication
Effective
communication
Mutual accountablity
Collaboration Outcomes 2009-2012
Low (1-2) Mid (3) High (4-5)
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Video Clips
Video of Janice Boudreau, a Family Support
Coordinator who helped lead the Referral
workgroup, describing her experiences with
collaboration between programs.
Video of Roy E., who presented during a
collaboration meeting and has aged out of
services, describing his experiences with
services from both programs.
Process
� 6 Statewide 6 hour meetings with Care Coordination & Family Support
� 19 Individuals participated in Regional Case & Collaboration Meetings
� 3 Information & Referral meetings
� 6 Months of Pilot tool testing
Outcomes
1
87.0%87.0%87.0%87.0%
8.4%8.4%8.4%8.4%
4.5%4.5%4.5%4.5%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
2012 NH SMS Family Experience
with Services (n = 308)
Excellent/ Good Satisfactory Fair/ Poor
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Impact & Outcome
� Cost Savings - Less duplication, raises for staff with no new funds achieved through change in Administration (2.5 less FTE PIH Administration staff), use of Social Services Pay Scale in
conjunction with Public Health Pay Scale
� Improvements in Quality & Robustness of Services - Improved role clarification, of specialties, allowing focused and thorough work in each area
� Integrated Community Social Service Array - Previously limited by individual
program knowledge, time, and resources
� Workforce Development - Shared training on Evidence Based Practices, other effective practices and related materials & projects (transition):
MI, Healthy Homes, Cultural Competency, Family Centered Care, Boundaries/Ethics,
Disease specific topics – Asthma, Diabetes, Epilepsy
� Evaluation – Shared satisfaction and needs assessment survey and analysis (biannually) &
shared staff for regional audits (also biannually)
� Refined Internal Processes - One enrollment application, consistent referral process
established, and programs re-framed to reflect primary roles
� Improved Systems for Families - Increase in Family Satisfaction indicated on 2012
Satisfaction Survey and improved Family Centered Care reported via self rating on SMS Motivational
Interviewing Survey
Outcomes
Re-Framing: Overview of Care Coordination
& Family Support
Families
Satisfied!•
CC FSReferrals
Understanding
Respect
Role Clarity
Communication
Trust
Improved:
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Replication of CYSHCN Collaboration to Increase Support
Care Coordination Partnership with Family Support
Replication may include collaboration with Family Voices, Respite Programs,
Developmental Services, Home Visiting, Child Welfare Family Support, Provider or
Insurance Case Management, Medical Home Care Coordination, or other similar
program to:
� Increase capacity in Infrastructure Building
-Workforce development & Evaluation
� Expand Enabling Services
- Family and community services for children and youth
� Achieve greater family-centeredness
� Achieve cost saving
Where are we going?
2020 SMS Strategic Intentions
MISSIONMISSION
To identify and integrate supports that assist families, provideTo identify and integrate supports that assist families, providers, rs,
and communities to meet the unique challenges of children and and communities to meet the unique challenges of children and
youth with special health care needs.youth with special health care needs.
12
Where are we going?
2020 SMS Strategic Intentions
System of Care Development (also Goals of MCHB):� 2.1 Children and youth with special health care needs and their families will partner in decision-
making at all levels and will be satisfied with the services they receive.
� 2.2 Children and youth with special health care needs will receive coordinated, ongoing,
comprehensive care within a medical home.
� 2.3 Children and youth will be screened early and continuously for special health care needs.
� 2.4 Families of CYSHCN will have access to adequate, private and/or public insurance and
financing to pay for the services they need.
� 2.5 Community-based service systems will be organized so families can use them easily.
� 2.6 CYSHCN will receive the services necessary to make a transition to all aspects of adult life,
including health care, work, and independence.
State Leadership for the System of Care:� 1.1 Provide leadership to promote collaboration and planning of statewide services for CYSHCN
� 1.2 Establish recognition and visibility as knowledgeable experts in the field.
� 1.3 Focus on quality improvement and innovative initiatives.
� 1.4 Strengthen diversity and effectiveness of the workforce.
Contributors in Meetings
Special Medical ServicesSpecial Medical Services
NH SMS CC & FS Coordinators:Maureen Gilbert-Thibault, Janice Boudreau,
Pat McLean, Judy Saddler, Janet O’Brien
NH Family Voices: Martha-Jean Madison, Terry Olson-Martin,
Sylvia Pelletier
NH Families:Roy E. & John J.
NH SMS & PIH:Mary Morency, Sharon Kaiser, Maggie Bernard
Other OfficesOther Offices
NH Bureau of Developmental Services: Matthew Ertas, Lorene Reagan
NH National Alliance of Mental Illness: Claudia Ferber
Strategic Planning Contracted Facilitator: Gerri King
13
� AAMR, ARC, CHP, CQL, NACDD, UMN, & TASH (2004). Community for all toolkit. 1.1. Human Policy Press.
Retrieved January 10, 2013 from: http://thechp.syr.edu/toolkit/Community_for_All_Toolkit_Version1.1.pdf
� ACF. SSBG Legislation. Retrieved January 25, 2013 from: http://archive.acf.hhs.gov/programs/ocs/ssbg/index.html
�AMCHP (2009). Models of care for children and youth with special health care needs: Promising Models for
Transforming California’s System of Care.
�Aydede, SK & Shenkman, E (October 2007). State care coordination programs for children with special health care
needs: results from the web-based survey with the state Title V children with special health care needs directors. Institute
for Child Health Policy - University of Florida.
� Brown T. (2000). Care coordination for children with special health care needs and their families in the new
millennium: Principles, goals and recommendations developed by the AMCHP Working Group on Care Coordination.
Washington, DC: Association of Maternal and Child Health Programs, 15 pp.
� Community Living, Institute on Community Integration. Retrieved January 10, 2013 from
http://rtc.umn.edu/docs/risp2010.pdf
� Kruger, BJ. Care Coordination in Allen, PJ & Vessy, J (2004). Primary care of the child with a chronic condition,
fourth edition. Elsevier Mosby 102-119 pp
� Larson, S.A., Ryan, A., Salmi, P., Smith, D., and A. Wuorio (2012). Residential Services for Persons with
Developmental Disabilities: Statues and trends through 2010. Minneapolis: University of Minnesota, Research and
Training Center on
� NCD (2011). Rising Expectations: The Developmental Disabilities Act Revisited. Retrieved December 6, 2012 from
http://www.ncd.gov/publications/2011/Feb142011#toc32
� NH PIH (2010). 20 years of New Hampshire Partners in Health History.
� NH SMS (2012). 2012 SMS Satisfaction Survey.
� Forming, Storming, Norming, Performing, and Adjourning.
http://www.niwotridge.com/PDFs/FormStormNormPerform.pdf
� Formation of a Team. http://www.techdoertimes.com/wp-content/uploads/2010/06/5-stages-team-growth.gif
References
For more information contact:
Collaboration
Family Support: Alicia M. L'Esperance,
BS/BA, NH SMS PIH Program Manager
Email: AML’[email protected]
Phone: 603-271-4508
Care Coordination: Kathy Higgins Cahill,
RN, MSN, NH SMS Program Manager
Email: [email protected]
Phone: 603-271-4510
Strategic Planning
CYSHCN Director: Elizabeth Collins, RN-BC, BA, BSN, MS, NH SMS Administrator
Email: [email protected]
Phone: 603-271-8181
